After the death of Talia Goldenberg, her parents have launched a new nonprofit: Talia’s Voice: Projects for Patient Safety. “If I can have an impact on one person, that’s a potential life saved,” says Talia’s mother.

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In the days after a Seattle Times story last year chronicled the death of Talia Goldenberg, her parents were inundated with messages from around the country.

Some of them came from other medical patients who felt their voices were sometimes ignored by doctors. They could relate to the troubles Talia faced at Swedish Health’s Cherry Hill facility in Seattle, where, shortly before a deadly turn of events, she had expressed frustration that her breathing troubles weren’t taken seriously after spinal surgery. Others came from nurses who longed to see improvements in how hospitals deliver care to patients.

One of the messages came from Jon Friedenberg, the chief operating officer at Marin General Hospital outside of San Francisco.

Friedenberg had found Talia’s story disturbing. With his hospital in the midst of long-term patient safety reforms, Friedenberg sent a letter to Talia’s parents, inviting them to travel from their home in Oregon to California to discuss their experience and give insights that might improve patient care.

A SEATTLE TIMES SPECIAL REPORT

Surgery was supposed to mean a better life for Talia. But something went wrong.

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Swedish double-booked its surgeries, and the patients didn’t know

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The request came as a surprise to parents Jeff Goldenberg and Naomi Kirtner. They were still reeling from their 23-year-old daughter’s death and the anxiety of sharing her story with the newspaper. They had never spoken in public about Talia’s case. Even in private conversations, they had rarely gone through the grueling process of detailing the complete horror from start to finish.

Still, they saw the Marin invitation as an opportunity. They had for years recognized a need for a cultural overhaul of the medical system. Goldenberg was a family-practice physician for more than two decades, and he had particularly contemplated ways to improve communication between doctors and nurses and patients.

“If I can have an impact on one person, that’s a potential life saved — or complication or harm to a patient that doesn’t occur,” Kirtner said. “That makes it worth it.”

In June, they made the trip to speak at Marin, first to a group of about 100 nonphysician staff members, then in another talk with more than 60 doctors.

“The response was really extraordinary,” Friedenberg said. “One of our surgeons sent me an email (saying) it was the single most important presentation he’s been to in his career.”

A new endeavor

The process of preparing for the Marin discussion laid the groundwork for a larger endeavor. In September, Goldenberg and Kirtner launched a new nonprofit: Talia’s Voice: Projects for Patient Safety.

They also have spoken to students at Oregon Health & Science University in Portland and at the University of Oregon in Eugene. They are scheduled to speak at St. Charles hospital in Bend, Oregon, and next month they will speak at a medical ethics conference hosted by the Association for Practical and Professional Ethics in Chicago.

From their personal experiences — not just in Talia’s case — and in consultations with industry professionals, they see a range of problems to address. In improving communication inside the hospital, they see a hubris that causes some medical professionals to discount the voices of patients. Research indicates that after asking patients to describe their concerns, doctors generally listen for about 20 seconds before interrupting.

Adding to the problems, Kirtner and Goldenberg said, are that nurses may not feel able to speak up about issues because they are expected to defer to the doctor, and patients who often feel like they can’t speak up without alienating the nurses who are critical to their care.

“The entire culture needs to shift, because the way it’s structured has an impact on everybody,” Kirtner said.

With the nonprofit, they plan to support research on communication strategies and to work with upcoming medical students. They see potential in working with larger organizations to show the business value of embracing listening as a core value.

But they also see specific policy changes that can be made. As an example, they say, patients and families in the hospital often have no idea when doctors are going to make rounds — and that those visits are often brief. Improving that communication and coordination could ensure everybody can participate in a joint discussion about the patient’s care.

In the early morning before her death, Talia’s father was away from the room when the doctors visited her. He said Talia’s first words to him later were “I wish you had been here. They wouldn’t listen to me.” Text messages showed Talia had concerns about her breathing. Less than two hours before her death, she told one friend that she was having a “very, very hard time breathing and feel like the docs aren’t quite takin it seriously.”

Goldenberg and Kirtner said they’d also like to see changes in how the rounds are conducted, noting that Marin requires doctors do the work with a nurse, helping get everyone on the same page.

Contacting Swedish

One of the places Goldenberg and Kirtner have approached to do the work is Swedish. They came to Seattle for a meeting with Swedish leaders in the fall, discussed potential ways to work together and proposed a large joint effort between their nonprofit and Swedish that would have included annual events and other cooperation.

Swedish didn’t agree to that, instead saying it was investing in other quality and safety systems.

“As a pediatric urologic surgeon and a father, I greatly respect the work Naomi and Jeff are doing to improve communication between patients and health care providers,” said Swedish CEO’s, Dr. Guy Hudson, in a statement. “Our mutual goals of improving communication across all aspects of health care are in alignment and genuine.”

Kirtner said she was surprised by the response because working together seemed like a win-win opportunity.

“It did feel like a chance for restorative justice,” she said. “It’s disappointing.”

A Seattle Times series about Swedish was first published online last year on Feb. 10 — the same day Talia went into surgery in 2014. Since then, the health organization has undergone a series of changes, including the resignations of the CEO and a top surgeon.

Hudson also has changed personnel at the management level and largely banned the practice of overlapping surgery that had been regularly used by top brain and spine surgeons.

Goldenberg and Kirtner said they have been glad to hear about some of the efforts Swedish is making to improve patient care, but they are concerned it is focused on the point of view of providers, not the fundamental changes needed to address the experiences of patients from their perspective.

“They are wanting to keep customers happy in a business sense,” Goldenberg said. “It’s different than trying to improve communication with patients.”